LIFE IS A SPECTRUM

Occasionally, Dave dresses our children. Or tries. It's always an interesting experience. He doesn't bother with things like checking the size, whether

S_willow_daddykiss_BW

its seasonally appropriate or matching the colors. He alternately puts too many pieces of clothing them or too few. He has a very open-minded attitude as to what constitutes an outfit.

He finds girl clothes particularly baffling. One morning, he got Willow up, dressed her and brought her down to breakfast.

Me: Why is she wearing that?

Dave: What? It's cute isn't it?

Me: It's a swimsuit.

Dave stares at Willow for a long moment, trying to absorb the fact that the two-piece bikini with a picture of Pooh Bear in a boat on it is not, in fact, an appropriate outfit for church.

Me: It has matching water wings.

Dave: Oh. That's what those are.

He has, on occasion, dressed her in her brother's clothes, nothing but a raincoat, and a dalmatian Halloween costume.

But one of the things that make him such a great dad is that he always tries. He'll fumble with tiny buttons and hairbows and little shoes and socks. And if our daughter occasionally goes out in public looking like a tiny bag lady, that's a small price to pay.

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Hehe

That was super cute :) Happy Birthday to Dave!

picture

what a great picture.

Happy Birthday to your hubby!

And good on you for letting him try! Sometimes I can be such a control freak about that stuff...

Dressing our daughter

I can see your "control freak" and raise you one, my sister.

I've recently taken to laying out both kids' clothes a week in advance, in little labeled compartments in the downstairs closet -- from shirt to socks, it's foolproof.

Dave still managed to put one of Willow's outfits on backwards.

hahaha!

Hilarious! That water wings line just kills me!

What is it about men? My husband is so good at dressing himself--anything he throws together just looks right on him. And he does a better job shopping for me than I do. But when it's time to dress the boys, it's like his mind goes into fashion meltdown. Two different shades of red together! Crocs with dress pants! Putting swimsuits on the boys? I can definitely see that happening.

Let's sign these men up for a class or something. Surely this is a universal problem.

Dressing the kids

Dave did the "two shades of orange" on Billy this past week. My child looked like he was heading off to work in a 1970s Burger King.

There definitely needs to be some community education class "Dressing your children: for dads!"

Total 6 comments

colorspectrum

Dave (my husband) is English and graduated from Oxford University with a degree in biology. It's a pretty major thing to get recommended for Oxford, and Dave's math teacher, an alumnus, recommended him. Not because he thought Dave was excellent at math. “You get it wrong a lot,” he told Dave about his class work, “but you get it wrong in an interesting way.” He thought Dave had a unique brain and that Oxford could use more of those.

I think about this story sometimes when I watch Billy. A unique brain. Not less, just different.

I didn't always feel this way. When we first got the autism diagnosis, I was scared and angry and all I wanted to do was “cure” my son. I thought it was my duty to find some magic bullet that would wipe the autism right out of his system. And we went through a lot of them, as you can read in this blog.

But as an autistic scientist named Lisa Daxer said in a wonderful article I read this week, autism is a fundamental part of who my son is; it's a way of describing the way his unique brain works.

The wonderful thing about this past long, hard, rewarding, exhausting, surprising summer is the close bond I've formed with both my children. With Billy, it was an invaluable opportunity to really get to know my little mystery, as he sometimes seems to me.

My focus has shifted from trying to cure my son to trying to support him, encourage his learning, and nurture those sparks of interest and passion I see in his eyes. In that way, my job is no different than that of the parent of a normally developing child. Of course, some of our supports will include some speech therapy and occupational therapy and extra assistance with social skills.

But we no longer expect to spend every waking moment in therapy. As Lisa Jo Rudy describes so well in her book Get Out, Explore and Have Fun!, our support of our son also includes taking him to the museum and the park, encouraging his interest in music and getting him lessons in gymnastics (which we hope to start soon) and swimming.

I'm not saying that it's not hard sometimes. Clearly, Billy has communication problems, and life is always going to be difficult for someone who has difficulty communicating what they're thinking. (But he'll be in good company with most men on the planet in that respect.)

Billy has difficulty responding to or asking questions. He confuses pronouns. But he can remember verbatim a story or TV show he hasn't seen for months. He easily picks up phrases in any number of languages; he can now count and say the alphabet in Spanish, French, German, Japanese and Hebrew.

Socially, he's about a year and a half behind his peers. He's learning how to share, greet people, join a game. That may always be a challenge, on some level, for him.

But he's loving and funny and charming. He's just as devoted to his family and friends -- and even almost-strangers (like the school crossing guard) who might not realize their impact on him – as any normally developing child.

And he's happy. We all are. We're not just surviving; we're thriving. Some days we're happier than others – but then again, so are most families. Happiness is a spectrum, just like autism. So is intelligence. So is fulfillment. And acceptance and understanding. "Normal” is most definitely a spectrum.

We're a long way from Billy attending Oxford, but we are approaching the end of his first of week of Pre-Kindergarten at Buck Lake Elementary. It's been a great start to an important year for us. We'll be watching his development and behavior – and the classroom dynamic -- closely to determine whether another year in the public school system makes sense – or if we should start pursuing other options. So far, we're cautiously optimistic that there's a place for Billy's unique brain in the Leon County School system.

A unique brain. Maybe that's what the world needs – or will need – to solve big problems like cancer and AIDS and world hunger and global warming. Maybe hard work and intelligence alone won't be enough. It'll maybe take someone who can see patterns and make connections that a “normal” brain would never make.

I'm not saying that autistic people are going to cure cancer. Or that the only valuable autistic people are those savants who bring some super-skill to the table. All people are valuable. We are each truly unique and special. And we are all on a spectrum.

Reader Comments

Life is a Spectrum

So wonderfully written Amanda. And I so relate to everything you said here. I don't want to cure him, just want to help him be as functional as possible in the world, and to nurture his strengths and work on his challenges. This could be a big year for both our kids, as they are trying to find their way with peers, and learning new skills. It's been quite a year for Milo, as I am sure it has been for Billy... and they do have unique brains and we can cherish this in our boys. I liked you sharing about the languages... Milo can count in Spanish and say some words in Spanish, but not other languages.. that is great. Milo is quite the whizz at Maths, (addition, some subtractions and learning multiplication) he can read and write already. It's amazing how the brain is advanced in some areas. Milo also loves music. Billy sounds quite the character.

normal is also subjective!

as usual, love watching your mind work to reach beautiful conclusions. I think you have a unique brain too!

Life is a spectrum

Thanks *so* much, guys.

Sarah, I really look forward to hearing how Milo -- AND his parents -- are doing this year :-) I feel so blessed that I have so many wonderful new friends among the autism parents out there on the Internet. Comparing our stories and the similarities/differences in our special little guys' (and gals') minds, is a source of constant fascination to me.

Life is a Spectrum

I share this perspective with you, but unfortunately not everyone in my household does. I feel that I've come to terms and reached a level of acceptance for Audrey just as she is...which as far as I'm concerned is a nearly perfect joy in every way...but it sucks big time when your partner still wants to fix fix fix. I hope that he'll get to where I am someday.

so insightful

I have recently discovered your blog and absolutely cherish the insights you share. My little guy is 2 1/2 and the experts are pretty sure he is on the spectrum. (We're working with First Words in Tallahassee). I've avoided reading much about ASD because it always makes me cry. But when I read your blog, it puts everything in such amazing perspective. I appreciate your positive take on your experiences with Billy and the gifts he has. I'm still working through that wanting-to-cure-it phase. I'm striving to work towards just enhancing the gifts Mikey has, which are abundant, rather than just seeing the deficits. Thank you for the gift of this blog!

Life is a spectrum

It's such a joy to be able to connect with other parents -- particularly other parents of ASD kids -- and hear your stories, share your joys and sorrows, and support each other. I meant it when I said that "acceptance" is a spectrum too.

I will say this: I'm happier now that I don't see autism as the enemy. But I wasn't able to get past that without the confidence that develops with the simple passage of time. Over time with a child on the spectrum, you become impossible to embarrass, you finely hone your "Mama bear" skills, and you just learn a lot more about what's out there, what's available, what works, what doesn't.

Thank you for reading and sharing and being that virtual support that helps me laugh my way through the week :-)

Total 6 comments

coffeemug

COFFEE!

  1. Take my son to the potty and back to bed.
  2. Repeatedly tell him that “What is the opposite of elephant?” is not a question I can answer before finally answering, “Dog,” just to get him to go to sleep.
  3. Repeatedly curse the Baby Bumblebee “Opposites” DVD.
  4. Fidget nervously in bed for so long that Dave, still sleeping, literally kicked me out of bed.
  5. Change my clothes three times. What outfit says, “Take care of my baby. I'm right across the street?” I assemble an outfit. Then change again, because I realize I look kinda like a ninja. Sundress it is.
  6. Drink a very large cup of coffee.
  7. Fueled by caffeine and nervous energy, update my Facebook status twice, tweet about the joys of coffee, and write about 40 million posts on MomsLikeMe.com (sorry, ladies). Expect to receive a couple of calls and emails later questioning my mental stability.
  8. Drink two more very large cups of coffee.
  9. 10 minutes until wake-up. I rearrange some of the living room furniture. And then put it back because I can no longer get to the bathroom.
  10. Wake Billy up for school! With the song “Good Morning To You.” His response: “Please stop singing.”

    Happy first day of school!

Reader Comments

love it

lol I love it! I look forward to our first day of school in a couple yrs!

1st Day of Pre-K

You're a great mom. Billy will be fine. Put your feet up and relax. Take a nap when Willow naps. Our boy will meet and greet you with a huge smile on his face. No doubt! But, the minute you get him home.....CALL ME!!

First day of school - thumbs up!

Thanks for all the good wishes! It turned out REALLY well ... Ms. Jade said he had a very good day, and while he was very tired by the end (he was too nervous and excited to sleep much the night before), he really participated in almost everything. He was talking about one of his friends from class last night. We're looking forward to Day #2 being even better. He slept MUCH better last night.

First Day of School

Hahahahhaha! Awesome. I'm with you on that Baby Bumblebee DVD.

So how did it go? And I'm not just asking about Billy, I'm asking you, too? How'd you do with the drop-off? :)

Hugs to all our babies. How lucky are we to have a front row seat as we watch them grow!?

FDOS

Haha... Super funny... I know that feeling-what should I wear?!?- so well. Glad Billy had a great first week!

Total 5 comments

S_BlackBeast4

Something else he'll have to leave at home: my now stretched-out black nightshirt. "I'm the Black Beast," he told me. Indeed.

We've had a wonderful summer. More on that once I've safely gotten him off to school tomorrow.

Right now, I'm more nervous than a two-tailed cat. I feel like I've been shopping for school supplies for a month. But as I'm checking and re-checking the list of things Billy's supposed to bring tomorrow (two bottles of antibacterial soap, boxes of crayons and markers, an assortment of sponges, a ream of copy paper, etc.) I've been thinking about the things he might miss from home.

5. The witch hat
The quintessential image of my summer is Billy zooming around the dining room table on his scooter wearing nothing but Pullups and that pointed witch hat.

4. His Razor scooter
We used to think Billy had coordination problems, but he is crazy good on the scooter. He can weave in and out of furniture, narrowly miss my toes, spin circles and stop on a dime. I actually think it calms him down sometimes, focuses his attention. I just mention it in case any other parents with “sensory seekers” (and a lax attitude toward their hardwood floors) want to give it a try.

S_BillyinaBox2

Maybe they'll have a storage tub at school that he can relax in.

3. Peanut butter
One of his classmates has a peanut allergy, so no peanut-related products in his lunch or snack. And that got me to thinking how much harder so many parents have it than we do. That peanut thing is serious, scary business. Billy loves peanut butter, but he can have it after school.

2. The laundry basket
Second only to the witch hat, the laundry basket is his costume of choice. It's one of those net pop-up ones, so he can see through it, and he wears it over his head as “Robot Billy.” Sometimes he wears it while riding his scooter. Once, he fell asleep in his bed wearing it.

S_WillowGlasses3

Billy's best buddy

1. Willow
Billy's sister was barely one and barely walking when school was last in session. Now she is his best friend, playmate, sworn enemy, bath buddy, wrestling opponent, and fellow robot. She has been the third member of our circle during this summer's “circle time,” the world's most appreciative audience for his antics, and the hand he holds while watching TV. He has been the center of her universe. It's going to be hard on her. And me. And very quiet in our house.

Reader Comments

Love all of it

And feel your pain. As a parent I can't bring me...that is hard...

Life is a Spectrum & Peanut butter

Wow what a great story! Really enjoyed reading your blog. I'm a single mother and have a 12 year old son with ADHD; ODD; ASD and anxiety. Which I usually say he's got a lot of alphabets. If you think about it everyone has some kind of alphabet connected to them. I haven't had a chance to read your article 10 things everyone should know about Autism but look forward to reading it tonight. I have struggles with him everyday and my boyfriend kind of understands it but he also thinks a lot of his issues are attitude related and I have to agree with him a little bit. My son is great with everyone else but the minute I walk into the house he completely transforms into someone else and the attitude kicks in, the disrespect comes in and practically every other behavior usually teenages have appear. Don't get me wrong he can be great around me at times but not always. Then there is the whole school thing. He struggles so much with practically everything and he hates home work. He's in public school and as much as he struggles he's done pretty well.

I thought my child was the only child on earth that LOVES peanut butter. My son can take a big spoon and scoop out a huge scoop of peanut butter which he usually does everyday. Glad to hear someone else loves peanut butter as much as he does.

Attitude, behavior, and the ABCs of autism spectrum

Hi, Sheila! Thanks for getting in touch :-)

One of the hardest things of parenting a special needs child is figuring out what is behavior and what behavior is related to the disorder. You're absolutely right: Everything they do is not caused by autism or AD/HD or whatever disorder they're dealing with.

And yet, we don't want to punish them for something they can't help. It's really tough. Did it get easier to tell the difference with your son as he got older and was able to talk to you more? Right now, Billy is so frustrated by his limited ability to communicate that he just tantrums when he's upset. Sometimes, it's just a four-year-old ticked off that he's not getting his own way. And sometimes, it's an autistic child frustrated that he can't communicate. It's an ongoing problem for us, dealing with it appropriately.

And YES, he LOVES peanut butter! He's such a picky eater that we were delighted when he started eating P.B. He would eat it every meal if I would let him! If I had his metabolism, I would too :-)

Autism support in the UK

Hi, Jennifer!

Thanks so much for getting in touch. I'm really interested to hear what you said about the lack of autism support in the UK. My husband is British (from England) and we occasionally talk about whether we'd be better off going back to the UK where we wouldn't be at the mercy of insurance companies for health care coverage.

Does your son receive therapy? Behavior services, occupational therapy or speech? Since he has Asperger's, he may not even need speech therapy. But I'm just curious to hear more about your situation and how the coverage of therapy compares.

Again, thanks for checking in and I hope you'll stay in touch :-)

My 13 yr old son has Asperger's and loves peanut butter!!!! Unfortunately he has no control over his eating and will gladly polish off a full jar when your back is turned. Although he was not diagnosed until he was 11, once we learned about ASD we realised and understood all them tantrums as a younger child, and the guilt of not realising your child was not the antichrist that strangers in Tescos etc thought he was with me as the worst mother on earth made me cry as much.
Yes it is near impossible to work out whats autisms "fault" and what is basic human nature.
At the min we cant get our son to sleep and we cant get him to go to school. No help from anywhere, but realistically if we his parents cant get him to go to school, who can??? Autism support is rare in Northern Ireland and im guessing its not too great in rest of UK.

Total 5 comments

INT. DINING ROOM - DAY

S_BillyWitch2

Disastrously messy house. Four-year-old BILLY glides in on his scooter, wearing nothing but a Halloween witch hat and a pair of Lightning McQueen Pull-ups. He puts his face exactly one inch from his mother's, who is trying to type.

BILLY: I want to be a great actor.

Mother fingers immediately freeze over the keys and she spins toward her son.

Mother (shocked): You want to be an actor?! That's WONDERFUL! I think you'd make an awesome actor! After all, you're great at learning lines and, clearly, you love costumes.

MOTHER'S DREAM SEQUENCE: Insert 30-second montage of handsome young man accepting Oscar. He blows a kiss to his tearful mother, who hasn't aged a day.

BACK TO SCENE

BILLY: A great artist.

MOTHER: An artist? So we have options. That's good. I wouldn't call it a “fall-back plan” but artist could be an alternative if Oscar winner doesn't pan out.

BILLY: A world-class athlete!

CLOSE on the Mother's eyes narrowing suspiciously.

MOTHER: Billy, what do you want to be when you grow up?

BILLY: An acrobat in the circus! An astronaut!

MOTHER: You're going to be an acrobat and an astronaut?

Her gaze lands on the top book on a pile on the floor. The Sesame Street "A Book."

BILLY: I'm going to be an ALLIGATOR!

Billy pushes off on his scooter, still wearing his witch hat, now cackling maniacally, as though he's said the funniest thing in the world.

Reader Comments

Re: The Witch Who Would be Astronaut

I LOVE THIS CHILD! and this post. love. love. love.

Smart!

Ha! Billy is so smart. I like the Oscar-winning scenario, because of COURSE you won't have aged a day!

My oldest still claims he wants to be a Rock-'n-Roll Astronaut. I'm still not sure what it is, but it sounds like it pays well.

My witch-astronaut-alligator

Thanks, Emily and Maura! Billy has now taken to sticking his head through one of the armholes of one of my black pajama tops (so that only his head is visible) and racing around the house. I asked him, "Billy, are you a ghost?" And he said, "I'm the Black Beast!" I have no idea what this is about; I hope it's not another potential career choice. Pictures of the Black Beast to come soon ... :-)

more pretend play

Wow, he really does have the pretend play thing down. I think an actor is not a pipe dream at all. I'm so glad that accountant wasn't in that book....way too boring for him.

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Smiling hugely

I love this! =) I wish we spring chickens lived in one place so the kids could play while we hens cluck about! =) I think Billy and K may fight over the hats though!!!! ;)

Great story. I could just picture it all. Love your writing style.

Total 7 comments

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